This is my first time on the forum since my primary diagnosis 15 years ago. Following numbness in the right side of my face and a few episodes of facial spasms I had an mri scan and found out on Thursday I have a 2cm brain tumour in the left frontal lobe. Utterly devastated after so long, I have had a few scares over the years but it’s finally got me. I now have to wait for chest, pelvis and liver ct scan which will be in the next 2 weeks to see if cancer anywhere else - which I am guessing there will be as I don’t think brain is usually the first place to spread. It will then be a wait for those results before treatment. Seems such a long time with life in limbo and terrified it is getting worse.
Myself and partner told our 2 daughters last night (aged 21 and 24) - it is so hard to be the person who devastates their life’s we are very close and the tears haven’t stopped as we are all thinking the worst. I don’t have anything to comfort them with as I can’t imagine what it would have been like to without my mum when I was there age. I didn’t expect to make old bones but not ready to leave all my family yet - only 53.
I realise there are not many people on this forum with brain mets, which is scary in itself but wondering if anyone can help me to know what to expect and how to help my family come to terms with what the future holds. Also I just feel I want to do something to help myself. I have not been told anything except don’t drive. Will diet and exercise help or am I clutching at straws ?
Just don’t know where to turn, I have the job of telling my 76 year old Dad this eve - we lost my Mum 2 years ago and my sisters husband last year. Life sucks at the moment !!
hi I am 14 years post bc initial diagnosis and was found to have mets in chest pelvis and spine plus 2cm breast tumour in original site havent had and investigations for brain mets. Been on letrozole and ibrance for 11 cycles which has shown reduction in 4 of 6 tumours and everything stable on ct scans have had a scan every 3 m0nths since starting treatment april 2018. I know its scary but treatments are out there and I have managed Ibrance with little side effects and people are living ith secondaries for much longer. Sending you love and support to u and your family Liz
No clue how these forums work as I have not used one before! I also have brain mets. Had first BC diagnosis 7th august 2015 age 37, then diagnosed with brain mets (left temporal) on August 10th 2018. I also basically got told next to nothing! I have had gamma knife treatment last September which appears to be working as the tumor is getting smaller. Waiting for results is the absolute worst thing ever! Think mine was 2.4cm when i had the treatment and now is 1.4cm and no more have appeared. I also have a daughter (aged 18) and it was the worst thing ever telling her. There seems to be no support as such for people with brain mets, as in a seperate forum or where to find meet ups. I’m from near Halifax, West Yorkshire. I haven’t changed anything about my lifestyle and don’t really intend to apart from maybe stopping smoking. Hope you are doing ok and have some support, I dont keep up on here but you are welcome to message me on fb if you like best wishes
Hello! Just wanted to say hi and write here as it’s the most recent brain met topic, I feel like I need some encouragement to help my dear mum fight this horrible disease… she has been diagnosed with brain mets in February, at the moment awaiting surgery to remove the tumor in the brain… it’s so scary as everything was happening without any symptoms untill she woke up one day and she wasn’t able to talk, right side of her body was paralised… she is lucky to have an amazing oncologist, neurosurgeon and the staff in the hospital are so caring. On Monday she will hopefully find out what the plan is in regards to treatment (MRI showed spots in lung and kidney) but we are hopefull that cancer can be treated for some time, my mum is such a strong woman, and so determined to beat the odds and show cancer middle finger… but I am really struggling emotionally, I’m so scared of losing my mum as we are very close, so please, if any of you have any inspiring/encouraging stories it would be amazing to be able to read them
sorry if I wrote in the wrong place, I’m very new to the forum
Hi everyone. Im 4 yrs past secondary diag almost 5 yrs and now waiting for urg brain scan due to.imbalance probs. Im terrified too i hate my body right now. Im 57 but my son is 28 and im so scared of leaving him.behind. i know i dont even know anything yet for def! Anyway just wanted to add my name to this post. Good luck to us all xx
I was diagnosed with brain mets in June and about to start cyberknife radiotherapy next week so you’re not on your own. My counselling with MacMillan is helping massively but it’s such an overwhelming and lonely experience!
I had primary bc at 31 fee -t chemo double Mx then 15 rads.
then 18 months later my left side wouldn’t work then they found 2.8cm mass in brain, I am lucky as Southampton hospital is close and had neurosurgeon there March 2018 then had my three month Brain mri review they saw a spot in surgery area and had one dose of SRS rads July 2018, I have a brain mri 4 To 6 months. I just take each day as it comes. My oncology team are great. I hope you are doing well.
I am so sorry to read your post, my heart goes out to you.
I don’t have much advice as I’ve only just been diagnosed myself, I’m 37 with a 4 year old daughter.
i have been making lots of smoothies with cancer fighting ingredients just to give
me a sense of control but I really don’t know what else to do. The hospital don’t seem that keen on anything alternative and just said eat to healthy and get out in the air and make memories x
Hello I had primary breast cancer 6 years ago and am having visual symptoms of something going on together with an abnormality on my left retina found at the optician yesterday. I have an opthalmic appointment tomorrow. No nothing definite yet but my husband and I have just about managed to keep it together this weekend.
Just got onto this site and read your story and want to send you a really big hug and to say I am rooting for you
best wishes